dee999

Dear Lainy/Clare/Gavin,

Sorry I haven’t written in a while. I am back at work now. I still have trouble sleeping, wake up crying almost everyday. I can’t talk to people anymore. Suddenly, the whole world seems happier. I am trying to stay put, but life as a routine seems very pointless.

My mom kept asking me in the hospital ” WHY?” – Why was this happening to us. I kept telling her not think about questions we don’t have answers to. She would just close her eyes and pray. I have seen her call out to God when she was in pain. I saw the strongest person in my life crumble. People like us not only had to watch the people we love the most die, we had to watch them suffer, for whatever time period it might have been.

I am an engineer. I am wired to analyze, to reason. My mom was the healthiest and the strongest person I knew. She never smoked, drank alcohol, she did not eat junk food or spicy or oily food. She exercised everyday and had a better lifestyle than I do. She was only 56. Her doctors told me that they were surprised to see her reports. I understand that maybe this dreadful disease might not completely dependent on our lifestyle, then if it is our immune system then what else affects it. You won’t know you have a cold till you sneeze. And a disease as life threatening as this, does not show any vital symptoms till at the very end. We claim that science and technology have made a lot of progress today. We can build a spaceship to moon and yet we don’t understand how the human body really works. Countless people, innocent people die of billions of types of cancers every day and yet there is no great awareness on cancer prevention. I don’t understand what’s worse, the disease or its treatment. What else are you supposed to do when you play by all the rules – run to the doctor each time your stomach hurts ? I keep replaying all the years I can remember – I can’t find a reason WHY. I have a million theories but they all seem like a fancy hypotheses. People tell me, its over, there isn’t any point, let it go. I lost the person I loved the most. I watched her suffer, I had to pray for her death, I had to watch her die helplessly. I am sorry – I can’t let it go.

She played by the rules, she is a good person, a great soul. My life would have been very different if this happened a few years ago. She gave me my life – she made me. I haven’t been able to pray in a while. I don’t think I ever will be able to. Pain of this magnitude, changes you. I am angry and I think I have a right to be. Yes, faith would tell you to be grateful for what you have, I am and I have always thanked God, my mom taught me not to pray with an agenda. She taught me to pray with my heart and soul, not because of fear. It could be worse, there are many in the world who have gone through worse. I understand that. But there are also those who are happier. People who don’t take care of themselves and yet live happy, content lives, who don’t have to suffer and yet die a peaceful death. Then why were we chosen – was my faith all these years pointless? Maybe God was kind to my mom, to have taken her so quickly, but were we people bad enough to not even get a second chance?

I am sorry, I know I am rambling. I know we all have these questions at some point and we are forced to live with that burden. This is the only place where I write to vent my heart out. So called friends or relatives, don’t even want to ask more. Maybe they are afraid of upsetting me or themselves, doesn’t matter. I really don’t care. I lost my best friend, my only true friend. I have to learn to live with this black hole. I am trying to swallow and move on with what people call “my life”, but just writing here and knowing that people reading this “actually” get it, gives me a great sense of comfort and I am very grateful to all of you for listening. I apologize again for all the rambling.

Bless you all,
Dee

Hi Desiree,

Sorry I haven’t written in a while. My mom moved on to a better place on April 13, 2013. I am still trying to understand what really happened.
She was diagnosed on Feb 1, 2013 when the doctors told me that we at least had a year.

I lived with my mom throughout this nightmare. She had been in the ICU since Feb 18, 2013. I was holding her hand the day she took her last breath. I gave her permission to go. On April 10, 2013 she was experiencing CO2 retention and the doctors told us that a ventilator was our only option. She was on the ventilator for the last 4 days. That was when I saw her cry for the first time. All I could pray for is that if God wanted to take her away please don’t give her any more pain. I have been sobbing bitterly since the day she was diagnosed till April 12, 2013. But I wanted her to die with her dignity. More painful than loosing her would be to watch her suffer helplessly. Loosing her is my burden, I will bear my punishment. But she deserved her peace. On April 13, 2013 after she took her last breath, the nurses removed those numerous tubes hanging out of her and I think I saw a smile. I saw peace. I felt peace. Her smile gave me hope. Hope that my beautiful mom is not suffering any more.

I want to scream but I can’t. I want to sob but I can’t. I know what that loneliness feels like. I have wished countless times I could take her place. I could ease her pain. There is regret and guilt and will always be there. I lost that one person I loved the most. I know I am never going to be OK. I am trying to learn how to live with it.

I know its hard. She is my everything and she will always be. Sometimes I feel like she is holding me and I try to sleep. Sometimes I have to concentrate on some random noise to quiet the voices in my head. But I haven’t been able to cry my heart out. I can’t understand why. Maybe I haven’t realized it yet. Maybe I had time to accept it. I don’t know.

I know its tough, but at least our mothers are not in pain any more. They have given us so much love and so many memories that it isn’t possible for them to die. To me death, is when life ceases to exist. Mom can never cease to exist. She is immortal. Her kindness is, her warmth is. I try to think that she has her peace now. Sometimes that helps me breathe.

Love,
Dee

Thank you again, Lainy. Your words give me comfort. I read posts from a lot of people on these discussion boards, and I can imagine how difficult and strong they must be.

I haven’t seen God but I know my parents especially my mom. Sometimes, the child inside me hopes that doctor will come and tell me she is ok. She will smile at me and tell me “Baby, lets go home !”. She doesn’t recognize me today, doesn’t talk, doesn’t smile. But I know I have to be strong.

I spoke to the doctor again today and he mentioned that they are waiting for a few more culture reports to adjust her antibiotics and if needed they might do an ERCP again, since it looks like the stents are not working. At least her platelet count looks ok and I hope they improve, so even if they have to do it they can. This illness just doesn’t destroy your body, it kills your soul.

Thank you again Lainy for your kind words and my deepest respect to all those brave ones who are fighting this dreadful disease. I hope we can all find that much sought peace that we so desperately are looking for.

Dear orlysud

I can understand every word you are saying. 8 weeks ago my mom was diagnosed with advanced stages of cholangiocarcinoma.

I live overseas too and I know how much I look forward to seeing my family every time I visit home. When the doctors told me she had cancer, I thought they were kidding. My mom is only 56 years old. All her she life she did 2 things – take care of her family and pray. She is the best and the most honest person I know. She had hyper-acidity and pain in her head when I visited home in January, 2013. We used to talk everyday for hours, no matter where I was. But since the latter half of December 2012 she couldn’t speak to me too much. I knew she wanted to but she couldn’t. I felt my gut saying something was wrong but I did not think it to be cancer.

We got her admitted into a hospital in Jan 2013, where she got her ERCP done and the metal stents helped bring down the obstructive jaundice. I stayed with her day and night, trying to take care of her to the best of my ability. At that time, she could still talk frequently and move about. The doctors told me that there was nothing that could be done, wished me luck and we were discharged after 2 weeks. We spent a week at home but then she started complaining of pain in her abdomen. We took her to a different hospital and they admitted her into the ICU because she had breathing difficulty. It has been more than a month now.

Every day is a nightmare one after the other. If we overcome the breathing problem, then her sodium levels drop and she goes into a drowsy spell. When we did overcome that, the oncologist gave her the first drug of her chemo and just early this week when she was due for the second drug, they found her platelet count has dropped and she has developed an infection where the stents were earlier put and today they removed some bile deposit as well.

I have been working nights to keep my job and taking care of her during the day. Sometimes, I feel like crying so hard till my heart finally stops. She is my best friend – my only true friend. We used to sing, dance, watch movies and yap a lot, today she stares into the blank space, looks at me with empty, hopeless eyes. Every day I hold her hand and murmur in my heart – “Mom you don’t have permission to leave. I love you so much. I need you, I want you”. But I can’t see her like that anymore. A part of me dies everyday, each time I step into the hospital. Things look good momentarily and then suddenly all hell breaks loose.

I was never religious but I liked to think of myself as a spiritual person. I don’t get it – Why us, Why her? If there is a God he does not have a heart. She taught me how to love God not fear him. Even today she prays – I know I am supposed to too. I can’t. I am angry, I have a lot of questions but there are no answers. The doctors have withheld her chemo since this week and everyday the doctor steps into the room my heart just stops. I got married a year ago, on this very day that I am writing to you. Memories keep playing into my head too. I can’t sleep I can’t smile. I wake up screaming at nights sometimes. Sometimes, I wish I stopped breathing and could just go away with her. I know I am supposed to be strong for my family but I am human. I can imagine what you feel like. Everyday I think may be today is the day. Sometimes, I think the doctors are all nuts, they misdiagnosed everything and we will get to go home and will have her life back. My mom is one of the most health conscious people I know – this does not make sense. Hope keeps draining everyday and with my mom I keep letting go of God too. I am lost but I can’t see my mom, my baby like that any more. Maybe I am selfish and am being punished for not taking care of her enough. But I know how you feel. I know how it feels like when your friends don’t get it, they can’t. Unless you have suffered through this, no one can. I wish I could give you a hug and cry, but from the bottom of my heart I can only say this, I understand.

Love,
Dee